Author: Grace by any other name

https://youtu.be/AWIWOBp4o9g?si=Az4LKKabYLKDhpV-

If you look at the distance between me and the floor, the space between my body and the floor, it tells a story. Black was me yesterday and worse yet, it was PAINFUL. My back was sore after trying. And the trying didn’t last very long.

This is now beyond urgent. This is scary. My right hip is behaving wrong too. Stiffer than ever, and a horrible burning, pulling pain I’ve never experienced in my life till this horrible long night that has just passed. It’s like the joint is freezing up. I would swear it is fusing. I wonder what an MRI and bone scan would show today as compared to last year’s. I have stumbled going to the loo. And when I forced myself to try sleep after the pain woke me and forced me to take a pain pill way too early, I was back in nightmare mode. I dreamt I’d injected myself with Cosentyx and was driving somewhere but then a strange woman took over and she was driving erratically and I thought I’d die in a car crash. I reached my destination – some sort of guest house- and the pain in the front of my hip was so bad that I had to lift my skirt to look at my thigh where I’d injected. My thigh was blue. A deep blue bruise and it was hard like bone and was bleeding. It had been bleeding for hours! Many trails of blood. The hardness scared me. Did I have a huge blood clot? Was I going to lose my leg??

I hadn’t had such vivid nightmares in five days. I also had increased my amytrypiline dosage but then reduced it in the hopes it was just a placebo effect that made me sleep a bit better on the higher dose. I guess not. I needed it to sleep longer and better.

I’m now scared. I don’t want to need a hip replacement. I don’t know if there’s any solution for a fused SI joint. And I know that fused SI joints cause problems for the knees. Knees already sore since Saturday. I lifted my arm to pull my blankets up over my shoulder and my shoulder screamed in pain.

This AS thing is quite a nightmare! Yesterday, I couldn’t reach. Too tired and too sore. My girl was happy but sad that the holiday was because of increased pain.

And no, I didn’t have any Salazopyrin yesterday. I’ll start again today though my knee did start again before yesterday… This probably is so incoherent. I just needed to document where I am. And no, no answer from the rheumatologist either. I wish this was an issue a GP could solve. All I need is a prescription for the Cosentyx! And lots of money when it arrives at the pharmacy. But I need to try because sniff is too awful to bear.

I was dizzy while lying down. It felt as if I was rolling off the bed! It was CREEPY! I turned on the light, wanted to get up to get my pain meds and oh my word, the room was spinning. And I have a heavy feeling in my head. Middle of my skull. I was so scared I even shouted out for my husband who was in the closet area eating before going to work. I was really scared guys. It lasted for too long and was so severe! I thought I’d need to go to hospital. He had that kind of dizziness when his kidneys were failing.

I read that Salazopyrin causes dizziness but the advice is, “Don’t drive, don’t operate heavy machinery and sit till it passes.” What I have experienced was worse than what seems to be something so trivially written of. My head still feels wrong. I’m still shaky. And I don’t know that it IS the salazopyrin. Add the kidney effects it has to my already not good kidney function and you have one very worried patient.

I don’t think I’ll take any today. Which means even more pain than ever. Things have steadily progressed while I wait for the next biologic. Went to church and someone who just greeted me only, wrote to say I looked tired, and asked if I’ve begun the Cosentyx. Needless to say, that made me happy and sad. For someone to understand that it’s linked is cool! Better than any concern and care, deeper and … Nobody in my family ever cared even when I told them I was about to switch off for surgery. They never asked thereafter how the surgery went. They don’t know anything about my current trials and tribulations because they wouldn’t help any. So it means a lot that someone gets this stupid diseases!🥹Also, the pain was horrendous. My knee, back, shoulders, neck… It was all over, but the knee and back were the worst. And when I got up to leave, having taken a short break and stood up before sitting down again, I couldn’t help but limp. My body didn’t like sitting for those few minutes! I limped down the stairs where I came across someone coming into church who asked why I’m limping. I can’t explain AS… He was a funny Malawian man. Funny because he speaks his mind and sometimes his mind is crazy. But he always shows concern. But nobody gets AS. None of the other Malawi people I’ve mentioned it to, so I just told him I was in pain.

Ammy, poor nine year old Amarissa was so scared I’d fall down the stairs that she even told me to hold onto the rail.

My sweet boy said, “I’m so glad you joined us, Mommy,” as we drove home. I wasn’t. I regretted having tried! But I am happy he felt happy.🥰

I’ve never suffered this much after such a short period spent seated. (Ok, the drive to that church is longer than the distance to my other appointments but still…)

And the breathing. The toilets are down some stairs. Stepping was painful. Walking up left me struggling to breathe. Singing hymns, I struggled for the first time ever. I kept telling myself, “They must be singing very slowly. That’s why I can’t hold the notes. It’s not me, it’s them. Because if it’s me, I’m in big trouble!”

All this led me to email the rheumatologist again. I need to try Cosentyx. I need to slow down what’s going on in this body of mine. I’m now really scared. Yesterday was our usual grocery day. I wanted to cry from pain. I wanted to weep in frustration. My legs didn’t want to move. It’s like my pelvis was freezing up on me and my husband kept having to slow down. This is me! The one who he used to say was “racing ahead.” Now he has to slow down for me.

I feel nauseous. I feel sick. I feel sad. And I’m waiting for plumbers as we have leaking pipes in two different areas IN OUR WALLS!! I just want to try lie down. I want to be comfortable – which is not really presentable for strange men. We can’t do bras. We can’t do clothing, really. I’m not teaching school today unless a miracle happens in the next two hours.

I’m in pain but scared to take any pain med in case it’s the cause of this attack. But not taking it will be bad. Look at Sabbath. I had taken one and the Salazopyrin but was visibly struggling.

What a mess. I hate AS. And my fingers are becoming more painful as the hours pass. Sorting laundry – ouch. I just want to lie down with a hot water bottle in my hands. The number of times I’ve had to erase cos they don’t want to type properly. Ahhh!

I won’t believe I’m done teaching the older two till their results come and they have a place at uni.

I will believe that my life is super complicated and that home education for special needs children when yourself have special needs is hard. Very, very hard.

During the bone B density scan, the lady conducting it asked if I have children and about pregnancies. Obviously, that led to us discussing my two awesome adoptees. And with my being sick and taking all the children myself, she was blown away. 🙂 She also said that people who GC adopt should automatically go to heaven as very few would do so.

I’ve never really thought of character development, Christianity and adoption from that perspective. I wish I could just waltz into heaven! She said that the path of suffering God has put me on is not for the faint of heart. I don’t really ever stop and think of it because I’d be depressed.!

But I can’t! So I’ll stay here on earth and look forward to the future.. when my resting days finally arrive. What a glorious day that will be.

Finger misbehaving still.. Pain increasing today.Let’s see what tomorrow holds. Today was fine-ish. Let’s hope tonight brings more sleep than the norm. 🙏🏾I have children to teach!

Dear Medical Diary,

On Thursday, I was rushing to get into the car for my bone density scan and closed the door with my elbow sticking out. Elbow got smashed by the door towards my face. My hand was holding my car key and that car key then went smash into my eye.

Friday morning, I saw the opthalmologist who told me it would heal in a day and said that my eyelid was covering the laceration (cut) so I didn’t need antibiotic drops or anything. I asked him if he was sure, given I’d used Enbrel which I’d been told slows wound healing. (Which is why you go off Enbrel at least two weeks before surgery.)

It’s now Sunday and the pain is still the same. Every blink is torture. Night time eye pain wakes me and the redness is not going away yet either.

I’m seeing even worse discoloration, spreading, than before Friday and I’m not happy. I really hope it hurries up and heals. The pain from blinking is like someone is punching my eye. This is definitely not healed after a day. Aaarrggghhhj!

You’re in everlasting pain,

Me

Jesus chose very specific people to be His best friends. It wasn’t Pharisees, it wasn’t Saducees, it was humble humans who wanted to know Him more. People who were willing to be poor like He was, so they could be rich in His works.

I read the first chapters of 5 Testimonies this week and I was refreshed and revived. And I felt as if I was being acknowledged. Going no contact with toxic family is not the norm. Many want me to continue being a victim of abuse. No thank you! And so I have been encouraged by the Bible that tells us to turn away from such, to flee the workers of iniquity, and upheld by those who live by principle, not be feeling.

Not only is it about protecting myself from more hurt and harm, it’s about making sure I am not allowing my mind to be filled with their unholy thoughts. Only a fool will think they aren’t going to be influenced by people refusing to be influenced by God. I need to be careful and be grounded in truth. Only.

This passage spoke to me. It told me I was on the right path. And yes, it is extremely painful to separate from associates who don’t want to fully associate with God. It is. It’s not pleasant to have to bid farewell to those you love. But if I’m truly converted, I will.

Hastening… Lingering is not good. Look what happened to Lot’s wife.

And so, thought right, thorny and lonely and hard this path is, I take it knowing it’s the path set before me.

If you have any condition that beds this medication and you haven’t begun yet-be warned…

I’m not sure that I will continue the Salazopyrin! The headaches, abdominal pain and other symptoms are building as it builds up.

Most reviews online are bad. Many people have ended up saying it’s not worth it and I agree. I don’t know..

I just wish we’d all find cures for all our incurable diseases. And I wish the cures were gentler than these ‘treatments.’ The swelling itself seems to be responding to the yellow devil, but the other pain it’s causing and the time spent in the bathroom is bad. And those joints it’s meant to be working on are still painful and stiff, though I do know it takes weeks and I’m not yet on the full dose. I don’t even know if I’ll have recovered enough to get to the consultation regarding the bone scan!

I actually feel hopeless and distraught. Trapped and suffering. Any drop of water I take, starts the loo trip and awful abdominal pain all over again.

I hate AS. I love God. But I’m struggling. I dreamt I found a learning centre for the children and was so happy! Alas. I’m still homeschooling while sick and sicker still because of treatment.

I feel so sorry for chemo patients who go through even worse. This is hell.

My undiagnosed autistic four year old (undiagnosed because I don’t see a need for it) is scared of babies.

They mention that autistics have big fears, phobias. This has been her phobia since last year when she was terrified by a yawning baby at church. Well, first, she didn’t want to see the baby. The best time, the baby yawned and that was that. She didn’t want to ever go back to church. Today, even seeing a PHOTOGRAPH of herself and her twin as babies was enough to cause utter mayhem. She cried then screamed and threw her juice bottle when a baby’s cries entered the mix. I felt so sad!

So, the phobia isn’t just of babies in the flesh, it’s any babies. And not just yawning, anything they do. Sad to discover this.

I wish my children could enjoy the world around them. It reminds me of my poor boy when we went to the Ear Institute for his auditory processing problems. They had some chairs that were meant to be child-friendly, and had painted palm leaves on the floor. The chairs were shaped like upturned hands with the ‘fingers’ being the back of the chair where you’d rest and the palm being the seat.Both of these were traumatizing for my son. The very things designed to be fun, were anything but!

I join in with the adult autistics who disagree with those calling for autism to no longer be called Autism Spectrum Disorder because they hate the word “ disorder” as they feel perfectly fine with where they are on the spectrum. Nice for them, but for many of my children, autism and its comorbidities has brought disorder to their lives.

It has taken their peace, and as a sweet sister noted today, it has taken my peace as well.

Anyway! The good news is- I don’t know who is reading and only one has asked- is that the paronychia seems to be under control! The cream and soaks and elevation over the weekend seem to have reduced the swelling a bit and definitely reduced my perception of pain. I can’t say the pain is gone because my threshold is high. Maybe for normal people it would definitely still be hanging around. But for me, it’s ’gone!’ Without needing antibiotics.

As for my next AS treatment, I have no clue! The doctor said I can get a form for the disabled parking online and send it through. But no word on treating this awful scourge. I’m more and more tired each day. The other day I fell asleep during the day while reading to my four year old. Had not done that in ages! And my bones feel like they’re on edge. Close your eyes and feel every single bone in your body. Imagine how it would feel if your bones were rusty metal and not oiled at all. Imagine moving that piece of metal with its joints grinding on each other. That’s me.

Tomorrow, I go see a doctor about having a DEXA scan done- bone mineral density scan. My gynae suggested it because of menopause; and given osteoporosis is a big problem in AS patients, I have two reasons to have the scan done and confirm the calcium supplements I’ve taken for the past four years has helped strengthen my bones, same with the exercise I’ve done. Let’s hope for the best and let’s hope I like the doctor! My gynae sent me to another gynae at a hospital 20 minutes away instead of my going to him, 40 minutes away. And let’s hope I get my results! The silence from my current gynae is what tells me the growth wasn’t cancerous.🤷🏽‍♀️

ETA- Less than an hour after publishing this post, I opened my mail and saw a letter from the medical aid saying they’d partially fund the Cosentyx- till October this year. Needless to say, I was relieved but not much. Though I’m suffering, at least I’m not suffering and paying lots like I will have to now that they’ve agreed to pay their little sum. And I’ll be paying and waiting to see if the new treatment even works. And I don’t know how exactly we will pay given the teens will hopefully be in university next year. So yeah. It’s ok news but not amazing. I don’t know how long it will take to work- if it will at all, what the side effects will be and if they’ll be bearable, nor what happens after October. The Enbrel had been approved basically for as long as it would help me.